What i faxed to House Committee Hearing on Autism

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Yesterday, I sat in front of my computer for several hours watching you have a discussion about people like me. For hours and hours I watched you talk about people like me as though we cannot hear you calling us an emergency, a crisis, a burden, a tsunami, hopeless, an unfortunate situation, poisoned, damaged. Always the horrific language. Always about children. Always children you claim to love.

All this talk of vaccines, of blame, of hate. I found myself asking again and again, why do you hate us so much? And why are we so invisible, that you can't even get past hating your kids enough to see that they hear you and that they grow up and that their adult counterparts are listening right now?

And then I heard Eleanor Holmes Norton speak up.

She asked about adults. She asked what happens to us if we are not in the system, if we are late diagnosed. She asked about people like me-autistic adults. People who the rest of the hearing seemed content to ignore the existence of.

And no one had an answer for Congresswoman Norton. But I do.

Congresswoman, I was diagnosed as a small child, but since I learned how to talk as a not much larger child your colleague Burton probably thinks I don't count. Since I could make it academically, and the goal of early intervention programs in those days (and many these days) is “mainstream kindergarten”, there are a whole lot of issues that were written off as behavioral, as choice, rather than as neurological.

Things like sensory issues.

Things like sequencing problems.

Things like inconsistent ability to functionally use language.

Things like not having a single friend in my grade.

Things like inability to remember and carry out auditory directions.

Things like an inability to get through a day in regular ed without melting down because I was so overwhelmed. Not when I was 5. Not when I was 8. When I was 15.

I am intelligent, I am academically capable, but there are things that I just. Can. Not. Do. And no telling me to try harder or just act normal or whatever was going to do it.

Congresswoman Norton, someone told you that our families thought we were quirky and took care of us. That person was incorrect. So incorrect.

By very early adulthood, my mother's war on autism (only since I can talk, I was “cured”, it was a war on weirdness, misbehavior, disrespect, what she perceived as willful faux cluelessness and laziness) had escalated to frank abuse, & she kicked me out of the house.

It was January. I was a statistic-a homeless autistic person. One of far, far too many.

I had read on the internet that services are a thing, that housing for people with disabilities is a thing, so I went to the local Arc to apply for services or at least get help applying for services. Do you know what they told me?

They told me that they had to talk to my parents. I was a legal adult, have never been under guardianship, and they would not talk to me, but only my parents. The parents who threw me out of their house after abusing me for years. THOSE parents. Those were the only people the Arc would interface with. They had no protocol whatsoever for working with adults with developmental disabilities who are independent but need a little help. Their one suggested resource, the local center for independent living, would not touch me with a 10 foot pole since I have developmental, not physical, disabilities.

The social safety net for all people is barely more navigable. It's more navigable in that it didn't require my mother. It's less navigable in that it required sitting in sensory hell for 4 hours waiting for them to call my number, every piece of documentation of income (or lack thereof) known to man, and it required making phone calls that never got returned on their schedule.

I would have starved to death waiting for foodstamps had another autistic person who has better phone skills than me-which is not difficult, incidentally-not called the worker who was supposed to call me back several times when they were not returning my calls.

And, Congresswoman Norton, I was one of the lucky ones. When I got kicked out, I got into a nice shelter, if such a thing can be said to exist. I was safer there than I was in my parents' home. I had someone who would call social service workers for me. I had a doctor who would fill out paperwork to keep me on necessary medication even though it is a pain in the ass. I had a social support structure that a lot of my Autistic peers just don't HAVE. The parent-centric service model was detrimental to my life, but it ends the lives of others.

This should not be the good outcome story here.

I'll tell you what happens to adult autistics, Congresswoman Norton: we don't fall into the cracks. We are shoved into the cracks. Those who deny our existence, like your colleagues, are doing nothing but shoving harder.